Extremely interesting article (website) if you can overlook the "busyness" and read the text.
I was researching low cortisol and stumbled on this article. It is soooooooooo me.
I saw the hema/oncol doctor recently - had not seen her in a few years - she could not believe how bad I looked.
She said she suspected adrenal insufficiency. My cortisol came back low - barely in range. She asked for the ACTH test - but that perhaps will not be run because the sample was not frozen. (too late in day - lab pickup times). (Will plasma freeze on dry ice?).
I have lost weight, although I eat well. I am always so cold. Something is going on with my muscles - more than wasting. New word: catabolism?
That reminds me of cannibalism - like something is actually eating my muscles.
I have all the symptoms he writes about.
I have suspected low cortisol problems - but wow.
Now - what to do?
To add: Dr. Lam mentions Lyme as a cause.
Also - I am so glad I went back to this hema/oncol. She was the one who Dx'd me with an immune deficiency years ago. I think she again found another large piece of my puzzle.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I read that website and it tells me all the bad consequences at length, and that nothing but macro and micro nutrients can work until improvement is seen before any of the usual suspects can be added back, like the missing hormones. And only an experienced practitioner can supervise this difficult treatment, of which there are probably hardly any in the world. And how this fits with lyme treatment, I haven't a clue.
Good luck figuring this out on your own or finding someone else to do it.
Posts: 2888 | From USA | Registered: Mar 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Lyme can cause this? Antibiotics as well?
At least I found something that perfectly describes how I feel. Almost like getting my Lyme Dx.
What to do about it - that will be tough.
I have been so tempted to do a Bicillin shot. To do something i/o nothing. Until I learn more about this - I think nothing is the best.
Whatever I do seems to be wrong - makes me worse anyway.
For now minimal amounts of salt, C., Mag. Maybe I can find a doctor to help with this.
Hopefully soon mHBOT.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Your doctor should know what to do about it. I take cortef for it .. not a great solution, but perhaps the only solution?
Make sure they properly check your thyroid as well. You shouldn't be that cold in Texas, that is for sure.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Thanks. The hema/oncol. doctor suggested I see an endocrinologist - that I might need to do an ACTH stim. test?
After calling/leaving messages with an endo. - no calls back - I just want to forget about seeing one.
I don't know if I want to do Rx meds for this anyway. Will research Cortef though, thanks.
My thyroid tests were normal as usual.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Thanks for posting this...catabolic wasting is what has been happening to me . I have been investigating mycoplasma as possible cause.
The muscle loss is what "no more muscles" describes in another thread .i just tried to revive one as well.droid says it has happened even with abx .
i wonder if neurons are dying and cannot be repaired fast enough..just read about how octipi use acetylcholine to regrow limbs? Is phosphatidylcholine similar.?
Next to the vertigo this painful wasting is the most debilitating symptom.can it be stopped? Reversed? Is it protein synthesis in liver? In gut ..?is it nerve death? Is it bugs softening us up...is it from death of bugs causing cell death...is it hormonal or adrenal ..i do have white spots on skin and have been in fight or flight for 2.5 years
here is link to hands that my feet look like . I doubt the 30 days and steroids really helped him but he got to work again.http://jnnp.bmj.com/content/63/2/257.full.
how the heck do we treat this?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Results from tests recently run:
Cortisol - low normal - barely in range Thyroid - normal (TSH and frees etc). ACTH (not stim test) - normal in mid range
Still thinking something going on with my adrenals. Not sure (if blood tests are reliable) what low cortisol and normal ACTH would mean.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Ya i had norm cortisol but have been feeling my adrenals kicking off for years...it would wake me with racing heart at times...there is another thread .scott recommended vit d salt maybe adrenals are playing a role ...my wasting is so site specific at first i thought liver proteins. ..brussels also has had results with v ray and treating liver...i want to treat more aggressive but i heard herxing too hard can exacerbate it...wish i could chat with dave martz a bit
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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